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Chiari Malformation Community
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Avatar universal

Anyone willing to look at my MRI slides and give opinion about Chiari???

So, I have been a lifelong migraine sufferer. Recently joined an online support group and a number of member suggested I look into chiari. I'm currently waiting for a referral to a new neurologist because my current one is an idiot/a$% and that's putting it nicely. In the meantime I have requested a copy of my MRI from 2015 though I didn't think to ask for the report (I'll be doing that this week). Basically im just wondering if someone can tell me if its looks like it to them, or if i should quite wasting so much time researching it lol
Some of the, various, possible, symptoms....
diagnosed with migraines at 7 - often feel like something is trying to bore through the base of my skull and if it gets bad enough makes it up to above my eye.
at about 15 i started experiencing oscillopsia (basically really bad nystagmus with super bad vertigo - like cant even sit up because my body doesn't know which direction that is)/ The MDs at the time did tests that said I had vestibular problems they said caused by my migraines??
Two years ago i started with these painful electrical shocking sensations in scalp. Was only happening a few times a year now it constant and its kinda like being tortured. Can barely put my head on a pillow now. What prompted to 2015 MRI.
About a month ago I experienced my first "true" experience of vertigo. had to sit in hallway and PCP almost made me got to ED cuz he said it was extreme but i had a followup with neuro, who said " you're not having a stroke so I'm not worried"
I occasionally feel the floor drop under me like the final stop on and elevator
Other random things: IBS and bursitis in most my major joints. kidney stones
Sorry for the long post and TIA for any opinions/help you may provide
4 Responses
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
First I must say we are not medical professionals......and even if we feel it may be Chiari that does not mean you have it or it is at a stage to warrant  surgery.

Your symptoms do sound like Chiari BUT there are sooooo many conditions even related conditions that can cause the symptoms you are having....

As far as your MRI, again I am not a medical professional but it does appear you may have a herniation but not sure of the size, not that makes a difference to me, but to most Drs especially those that are not true Chiari specialists, they look to the size of herniation....

So, your next step is more testing, getting reports and copies of ALL testing....and researching Drs that you can travel to and that are covered by your INS.

Having the right Dr is key!

Just know it may take time...hang in there and know you are not alone.
4 Comments
Thank you. I got a copy of the report. Everything says “WNL”. But Ive now had a few people look at thes things and say the same thing. Though I know we aren’t professionals. I’m just waiting for a call to get into my new neurologist and I’m going to bring it up to her and ask for a referral to a a specialist I guess. And another MRI
WNL? Sorry tired and not sure what that  is at the moment...lol...
Just means “within normal limits”
But normal limits for whom...a specialist or a Dr that just happens to be a neurosurgeon or neurologist? It is the same difference as saying a car mechanic or a mechanic that specializes in foreign cars......
Avatar universal
Sorry for not responding for a while,  been busy doing with crazy work schedule then laid up with my migraines. I keep seeing a post mentioning a list of NS by state but can’t find it. Do you know how to access it or of any that are near Virginia?
4 Comments
Hi...sorry but with the new format the lis is no longer available to pull up....just let me know which states you want and I will post them here for you.....do you want any in addition to VA?
BTW- Nothing in VA but we have one in West Virginia....Maybe MD?
Maybe MD or NC? Also a general question. As I said I’ve had migraines all my life so am used to “headaches”  however the past of month of constant pressure in the back of my head/neck, pain when turning with cracking and now I’m finding it hurts (top of head pressure) to lean forward. I get a wave of pain. As far as bending over, a few seconds later  I’ll get a wave of intense pain that almost drops me to my knees, but it doesn’t last long. It’s kind of a cold wash feeling but painful. It doesn’t actually hurt while  bent over.
I haven’t been able to find any full descriptions of the pain and when it start other than intense pain when bending over so I’m not sure if that’s what I’m having.
Also, thanks again. I have an appointment on 12/4 now with new neuro but even if it’s not Chiari youve been very helpful and encouraging which is really hard to find in this journey
I do have Drs in both those states and will post......as for your issues bending we are all different in how we describe our symptoms and pains....and I am not sure it can be pigeoned holed into a specific description...it may affect you differently then say myself  and that can be due to many reasons....so wait until you see the Drs and get more testing and I am sure it will then begin to make sense to you.

MARYLAND

Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD  20706
(7830 Old Georgetown Rd. Bethesda, MD
301-654-9390


Dr Marcella Madera
Primary Location:
The Johns Hopkins Hospital
600 N. Wolfe Street
Baltimore, MD  21287
Building: Meyer
Room: 5-109
Phone: 410-955-5464
Fax: 410-502-3399
Appointment Phone: 410-550-093


NORTH CAROLINA

Dr. Fuchs
Duke University
Pediatrics

Dr. Eric Rhoton
Carolina Spine & Neurosurgery
7 Vanderbuilt Drive
Asheville, NC 28803
828-255-7776

Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720
Primary: 828 684-1076
Avatar universal
All that went about as expected I guess. New neurologist didn’t even check my balance, which has gotten worse. And when I asked her about Chiari she said it wasn’t herniated enough to be Chiari. But she did refer me for PT, so who knows, maybe I’ll get some relief from the head/neck pains, electrical zaps, and arm tingling. And if not...I guess I’ll try again. Sigh
1 Comments
Please PM me if it was a Dr on this list.....I am curious.
Avatar universal
No it was the new neurologist I was seeing. Thought I had to start there in order to get referred out. But I guess that’s a bust lol
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